Monday, November 28, 2016

In
Unity, we believe that we co-create with Spirit. My dream to live fulltime on
the road was born in 2011, the night I created my first blog post. You can read
about it (here).

My
last blog post shared a little bit of what it’s like being out here on the road
while coping with a traumatic brain injury (TBI). You can watch the video and read about that (here). What I’ve never shared is
that I have always felt guilty for not being able to work, and I've carried the deep-seated fear that somehow I am responsible for creating my disability that got me here.

After
sharing my last post on FB, one of my earth angels, Rev. David H Howard, shared
this as a comment:

“Oh,
Sweetheart. Thank you for sharing yourself with us. As I watched your video I
was remembering how you shared with me your dream of van dwelling long before
it manifested for you. Your Soul knew even then what you needed. I am so proud
of you for holding to your vision and for seeing it through. You truly live the
lesson I gave today on Hope. I'll send you the recording. I am thankful for you
in my life. Joyous blessings my friend. I love you!”

I
read that and cried and cried. Years and a million pounds rolled off my
shoulders and freed my heart from the guilt I have been carrying for over a year now.
I wrote the following as my reply.

Wow, David, angel mine. You just gave me the BIGGEST gift, maybe ever. I love the way
Spirit shows up in you, through you, as you. "Your Soul knew even then
what you needed."

Being the human
that I am (grin), I have carried a heavy burden of guilt, in spite of my
efforts to transform it, that I may have somehow manifested my injury to get me
on the road. Since, as you said, it was a dream of mine long before it
manifested for me. I set my intention in 2011 to retire in 2020 and hit the
road fulltime. Here, in this moment, it does not look at all in 2016 like I
thought it would post retirement. Did I co-create this? Did I manifest it? Did
I "do" this to myself? All questions I routinely ask myself. In one
loving paragraph you released my heart ache.

My neuro
specialists have said that their best "guestimate" for the
development of my hippocampal sclerosis (HS aka scar tissue on the brain)
"probably" began around 2000 presenting initially as symptomatic in
2005 from the initial impact in 1995. I love the twist, the "in touch with
reality" loving perspective that Spirit/My Soul/God/The Universe
knew that I would need to heal and live out here, in nature, in my van. And Spirit took
all of that information to give me my dream in 2011 so that I could be prepared
when this day came. Wow, oh wow.

I am completely
puddled dear David. I hope you understand the depths of your gift. I didn't
subconsciously co-create the escalation of scar tissue so that I could live my
dream. My dream manifested so that I could live. Period. Tears of release
and gratitude are flowing. "Joyous blessings indeed." I love you too.

And
with that, a new day dawns and I no longer feel that I am weighted down by tons
and tons of guilt holding me back like I'm tethered to a colossal anchor. I have always been grateful for my blessings, and now I no
longer feel guilty about them. I live in a van. I get to see glorious sunrises and sunsets, and I am joyFULL.

Michael
Buble sings it best, “It’s a new dawn. It’s a new day. And I’m feeling good.” I make no apologies for what the Universe has given me.

Friday, November 25, 2016

I
put a video on YouTube today as part of my Friday series, “My Life As A
Vandweller.” It is titled, “Why I Am
Grateful to be A Vandweller” and you can click below to watch.

Before
you watch it, however, I feel the need to share that it is not your normal upbeat video
you are used to from me. I had a friend shoot a clip of me in the throngs of
being symptomatic from a seizure. I thought long and hard about whether or not
to share this video publicly, but the truth is that the only reason I would
hide it is because I was afraid of you, my viewers, and my blog readers; the
public in general.

I’ve
said it before and it’s worth repeating (at least to myself), I will not make
decisions based on fear. I feel the fear, and gather information, and then
hopefully make an educated decision, but I will not let fear as a standalone
factor be my decision maker. I cannot.

So,
here it is. I hope you are not too shocked.

Before
becoming a vandweller, I tried all that I could to remain independent. I even
tried living with my ex as a roommate! Now that should tell you something. It
was an unmitigated disaster, AND I am grateful to him for the offer. I also stayed
with my sister for awhile and I even tent camped – in August and September – in
Texas. The heat and humidity were unbearable but since I was no longer able to
work and could not afford housing, I was desperate. I will share more later and
offer it here on my website as a tab called, “My Story” but the bottom line is –
even though a few offered to let me stay with them for awhile (which meant it
was only temporary), I can’t stay in homes where there is a lot of noise. My
seizures were getting out of control.

I
had always planned on living this life – just not this way. When I was still
working, I bought a vintage Class B and was in the process of remodeling her
when I was told that my life as I had known it had probably come to an end.
Wow, talk about dreams going up in smoke, quite literally since Fiona (my name
for that rig) had an electrical fire right around that same time. But I wasn’t
ready to believe my doctors yet so I moved in to a trailer some friends bought
for me to live in. I am so blessed!

That
worked until I flooded it, and about that same time I could also no longer work
even a part-time job from home. So, it was a slow decline for me to end up tent
camping until my disability status was approved. Now I’m getting to where it is difficult for
me to be around people. Period. I have to be very careful and limit the stimulus
in my environment. Fortunately, that is possible out here. Unfortunately, my
world is getting smaller and smaller and I worry that people will not
understand. I also sometimes miss not being able to be more social. Sometimes.

I
have a disability. And I have to accept that. You’d think I’d be in to
acceptance around it by now, but I’m not. I’m getting there though.

Leave
it to me to be in the middle of the desert and forests and find a way to do too
much and trigger seizures like the one I had the day before Thanksgiving. I can’t
help but wonder....

What
does life have waiting for me if I learn to live within my limits? What could
be waiting for each of us if we learn to live in the flow and not worry? Just
be.

I have
come to accept that I cannot stay out here on my own, and fortunately I do not
have to. I am blessed with so many wonderful people in my life. My gratitude
video is ultimately about them, and about this way of life that affords me
healing – when I live it day by day, staying in each moment.

I
don’t get to do things by rote anymore. Even to walk across the wash to my
friends’ trailer (where I had a fabulous Thanksgiving dinner, thank you very
much Robert), I have to think about it. I have to pretend I’m OCD and check and
double-check the locks, and hopefully remember my keys, and wear the right
shoes for the weather. I have to remember where it is safest to cross the wash
so I don’t fall – every single time. Even to make myself a cup of coffee before
I go on a walk, I have to think about the 7 steps of drip-brewing a cup – each one
of them for every cup. I’ve already scalded my hand once because I tried to
rush the steps (and the thinking) and forgot that I’m not supposed to hold the
cup while pouring the water. Yes, that is one of the steps I have to think
through. So, if I’m symptomatic, I sometimes have to forego luxuries like
having a cup of coffee or taking a walk or visiting friends.

AND
my worst day out here is better than the best day I could have in assisted
living somewhere.

That bears repeating, my worst day out here is better than the best day I could have in assisted living somewhere.

So what if I don’t get coffee, or get to go see my friends,
or even take my besties, Nonni & Bentley, for a walk? It can make me sad
and put me in to a tailspin if I let it, OR I can look at the good, the
independence, the fact that this too shall pass, and wait it out. I can learn
from it and build an even better life the next day. My disability doesn’t have
to be debilitating. I suspect that is true for many with disabilities. I hope
it is. It’s why the ADA was formed, right? We deserve the chance to be accepted just as we are because we can still build good lives for ourselves. Now if I can just do the same
for myself, and move into acceptance. It is what it is. And it’s all good. Did
I mention that I’m working on it?

Most
people never see me when I’m symptomatic so they tell me I don’t look like I
have a disability. Yeah, I know. For the most part it is what is known as an invisible disability. Others that have seen me symptomatic tell me that I shouldn’t
be out here as a fulltime vandweller. But what they don’t know is that if I go
to assisted living, I will die. I just know it. It is that simple, and
complicated. It would kill me. Within those walls my disability would still
exist anyway, right?

So
this Thanksgiving, actually every day, my gratitude is for the people in my
life that have loved me and have made it possible for me to remain independent.
There are many, and more continue to show up every day. I shared many of their
pics in the video and I’m posting those pics below as well. I know I will
forget some. If you are not listed and should be, please forgive me. These are
peeps I don’t have a pic with (yet)...

And
the list could go on infinitum. You and the people in the pics below, and I’m
sure many that I have forgotten, are my earth angels. Your bright lights lift
me up every single day even when we’re out of touch for long periods of time.
At the risk of sounding corny (and it’s probably WAY too late for that, lol),
and to borrow an old song from Debby Boone, “You Light Up My Life.”

That’s
why, even in the throngs of a seizure this holiday, I remain forever grateful.
It’s a good life out here. See you down the road.

Tuesday, November 15, 2016

I
have started a new YT series, My Life asA Vandweller. It’s meant to give you a glimpse of my life out here as a
fulltime boondocker. The videos will air each Friday and will be 2-3 minutes
long, short and sweet. I know it is shameless on my part, but please subscribe to my YouTube channel if you have not done so already.

My
first in the series was “How to Declutter Your Van.”

Here’s
the behind the scene stuff....

While in Pahrump, NV for a few weeks, I
had pulled a lot of stuff out of my van so my good friend Bob Wells could make
a video of my new and improved interior - complete with insulation. I’ll let you
know when that airs on his channel, but in the meantime I encourage you to sub
to his YT channel (here) and follow his blog (here), if you have not done so
already. After you’ve signed up for my YT channel and blog of course.
;))

But
I digress....

So,
a lot of “stuff” is out on the ground for the shoot. I checked the weather and
we had clear skies predicted for the next 3 days. Perfect! (I said to myself.) I’ll
just pull everything out and do the
much needed culling I’ve been putting off.

And
I’ll make it a part of my video series too! Double Perfect!

NOT!

Clouds
rolled in.

Lots
of them. Unpredicted. It rained for 3 straight days.

All
I could do was cover up everything I
owned with tarps. Literally everything I owned was outside in that mess except for electronics and food – which was still inside –
thankfully! I got little to no sleep for those 2 nights. With every gust of
wind or every heavy downpour, all I could do was shine a flashlight and wonder
how much of my stuff was I going to lose.

That
was not the way I had planned on culling at all!

Fortunately,
I didn’t lose very much, but it was enough that I cried – 3 lawn and leaf bags worth. Some things I lost due
to the rain I never wanted to let go of. None of
that was discussed in the video. The show must go on, right?

After
going to the laundromat and washing anything fabric that had been outside (and was sopping wet) - all my clothes, linens, coats, dog beds, etc., I spent the next
2 days doing the Yes|No|Maybe
piles as shown in the video. In the middle of all that, fellow vandweller Al,
thought he would surprise me with a funny. The sign he gave me really did crack me up, and
gave me a much needed smile. I just had to include it in the video.

I
don’t have very good pics yet of the inside of my van, my home. I think you’ll
get to see more of that when I do a series video on the insulation. In the meantime,
the photo below is the closing clip in the video. I want to take this
opportunity to thank my good friend Robert for doing such a wonderful job on the videos, and for taking this pic of my van and my beautiful ridgy, Nonni.

It’s
a good life out here. See you down the road!

TBI HS SYMPTOMS

It took me 7 full days to cull, clean and get my van back in order. As mentioned, I spent 3 of those days inside looking out at my things getting pelted under tarps. I think that would be stressful and arduous for anyone. For me, with my brain injury, it was catastrophic.

Every time I do any upgrade or remodel to my van, it gets harder and harder to get it all back in. The task of tying up the loose ends is daunting and growing increasingly more difficult. I think it is safe to say that I almost didn't make it this time.

It's not just a matter of getting overwhelmed. I literally can't do it. My brain freezes when it sees all of my stuff out of place. I never used to be like this, but I think it must be a lot like what those with OCD experience. My things have to be in a specific place or I can't function.

An example: My friend Bettie has lost the majority if not all of her eyesight. I stayed with her a few days quite some time ago. I would absentmindedly move something and it was very stressful for her when it wasn't where it was supposed to be. It could be something as simple as putting the napkins on the wrong side of the counter, but I felt like a jerk every time!

So now, here I am, moving things on my own accord, and messing my own systems up. That kinda makes me an OCD blind jerk, of sorts (humor intended). Not only did seeing my things out of place mess me up, it was also painful trying to function during those 7 days with everything out of place. I get that when anyone remodels and their house is messed up that it can be stressful, but for me it was literally painful. My head felt like it was going to explode and I had many nose bleeds. Maybe one day a neuro can explain this to me. So far, all I get from the docs about symptoms like this is something along the lines of - the brain is complex and we may never fully understand it.

I'm grateful to my doctors for what they have done for me. I would be remiss if I did not say that. And I'm grateful they were able to finally give me a correct diagnosis that led to my surgery and yadda yadda yadda, AND I look forward to the day when they can tell me what's going on up there.

I got past all of that and then had to deal with putting everything back in. I won't be able to do that again. I often mention my "seizures" and I've tried to be real clear that they're not really "seizures" as most people identify seizures as behaving. My official diagnosis is Impact-induced Hippocampal Sclerosis (HS) that produces Mesial Temporal Sclerosis with complex partial focal seizures that include staring and/or blackout spells with or without reduced or full consciousness. Say that 3x fast.

Basically it means that my seizures include blackouts which equates to loss of time. I may or may not function during those times but I most certainly will not remember. It is SO frustrating. Stress brings it on more than anything. And please know that it doesn't just happen without warning. It's kind of like your laptop that is running low on battery power. You have plenty of pop-up windows warning you that the battery is getting low, then the lights dim and finally no one's home. It doesn't just happen. So, what does that have to do with putting my van back together?

Everything has a place. And, everything in it's place. Only it wasn't. It was total chaos and mayhem. I had to pick up each piece, clean it and bring it back in and put it somewhere. I lost time, many times, and it took forever. I'm sure those in camp were wondering why the heck doesn't she get her stuff back inside? I couldn't. Days turned in to nights and I can't tell you what I did in between, but the whole time I was working on getting my van back in order. It will probably be the last remodel or upgrade or cull that I do. All the King's horses and all the King's men probably won't be able to help me next time.

THE REST OF THE STORY

I did it. And if I can do it, you can too. Let it go. Don't hold on to things. It's just stuff.

I've been on the road a little over a year now (since 10/08/15), and I started off with an air mattress and a sleeping bag on the floor, a whole bunch of totes and a few drawers. I have a wonderful home now and have very few needs, if any. I want a tiny refrigerator which will mean one day getting solar panels on my roof, but if my things have to be moved to accomplish that, it probably won't happen. And that's okay.

It's a good life out here. I'm grateful for the added time it has given me to live and love and laugh. I'll see you down the road!

Sunday, November 13, 2016

That might seem like
an odd pic to call home, but this is home to me. It is the actual fire ring many of us sat around every evening for campfire "happy hour" this
time last year. Behind it should be a trailer, a Yukon and a ridiculous solar array
that belonged to our beloved friend and fellow traveler, Fred. I miss him.
Being here in his front yard makes me miss him even more, but I’m glad I’m
here. It feels like home.

I went to the Ehrenberg “mall”
this morning and did laundry, got some shower coupons and a mailbox for the
winter – the same as I did last winter. And it was in the middle of doing all
that I realized it really feels like home here. Then my traveling companion,
Robert, astutely drove my van and pulled his trailer up “The Hill” to where I
was camped this time last year (the fire ring pic). It really felt like home
once we got up past the power lines. You can read more about “The Hill” (here).

Once we got up the
treacherous road, thanks to Robert, I tried and tried to find this exact camping
area that I shared last year with Bryce, Fred and Barbara – plus the others
that joined us from time to time. I wasn’t able to, and that made me sad, but
it still felt good to be on The Hill. Robert went on a trek to find us a good
spot.

He came back, was
excited about the spot he had found, and drove us right to where I was camped
last year with my friends! He had no way of knowing that! I stepped out of the van and looked directly
at the fire ring we enjoyed every night that had been right outside Fred’s
front door. I have never had a place feel more like home than in that moment.

Home. That seems a bit
like an oxymoron for a nomad. Our home is on wheels and wherever we are at the
moment, but if any terra firma ever called to me, it would be here. I don’t
know why. Perhaps it’s because we have had 18 different campsites in 5 short
months throughout 5 different states!! That’s crazy!! Thank God I’ve been traveling with Robert, and
he’s been doing ALL the driving.

It has been brutal but
every bit of every mile has been worth it. Robert’s beautiful daughter got married Sept
3rd so we were in WY all of August through half of September. Then he got a
trailer and in order to pick it up, we went from CO to NV. Then he got a job and
his training for that took us to OR! Now we are back in Ehrenberg, AZ. Did I
mention it feels like home?

Perhaps it’s because
this is where I earned my chops. I hit the road on October 8, 2015 and drove
straight to Flagstaff, AZ to camp with the infamous Bob Wells. He took me under
his wing and is my forever friend that I am forever grateful to. He helped me
get a heater, a stove, and he and Jamie even built a bed for me! Bob made it
possible for me to stay on the road, and turned my van in to a home, and I
camped with him through November of last year before going to The Hill, but it
was The Hill where I became a nomad.

A side note: Fred and I arranged last year to meet in Quartzite so I could follow him to Ehrenberg and up The Hill. Bryce was already there. The Hill is/was his discovery. None of us would have enjoyed that winter together if it weren’t for
Bryce. Thank you Brycee!!

Prior to moving up on
The Hill I had already made friends out here – many friends, lifelong friends. Friends I’m
still in touch with and camp with from time to time as our paths cross. Except
one – I miss you Kyndal!! (She now lives in FL.) Kyndal, plus many others, taught
me many things about life on the road. But it was on The Hill where I learned
how to be a pioneer woman, where I started learning independence and bravery,
where I made it through being sick because close friends took care of me (Thank
you Bryce, Fred & Barbara). And it is where I nearly froze to death because
my thermal regulation is broken thanks to my brain injury, but those same
friends showed me how to layer my bedding and seal my windows and doors. Thank
you Fred & Barbara for that, and thank you Judy for teaching me how to use fleece for keeping warm. And Bryce made me homemade soup. Wow, I am so blessed. After that, I thought,
“With the help of my friends, I really can do this. No matter what happens. I
can live on the road.”

It is also where I
fell in love, and later out of love, but it is where so much of my life out
here began. It is my base. It is my nomadic home. Unfortunately, Ehrenberg and
Quartzsite stay in the triple digits through a good part of the warmer months
so I will never “live here”. Nor do I want to – I am a nomad through and
through. But today, I’m home. There’s no place like it.

That last pic is of my van at home on The Hill in front of the rising 2016 Supermoon. Yeah, that about sums up the day. It's a good life out here. See you down the road!

I
have been in Pahrump NV since October 15 because my traveling companion,
Robert, had work there. We left there on Wednesday to head to Mayer, AZ. That’s
where the pic above was taken. We went to Mayer to meet his daughter and her
family. They are from WY but came to AZ via Pueblo CO where they participated in a competition with Buck, their
German short-haired pointer. He won 1st Place in his class, got Winners dog and Best of Winners. Congratulations Buck and Juli!

Wednesday night we
stayed overnight on BLM land outside Mayer, across the highway from the Aqua
Fria National Monument near Cleator Crown King and Horse Thief Basin.

There was
a TON of pollen around there. This looks like normal
winter grass, right?

But
it’s actually pollen-covered grass from this bush.

When
we walked at night, it looked like snow in my headlamp. Here’s a close-up of it
stuck to the grass.

Between
that and the trash (ugh), we decided to leave there and stay a couple of nights at Dead Horse Ranch State
Park in Cottonwood AZ - even though we don’t normally stay in campgrounds. We had good reason this time. While Buck is at his
competition in Mayer, we have been keeping Robert’s granddaughters. What a special, special
treat! It's been a lovely day.